“It’s All My Fault!” Understanding Guilt in Parents of Children with ASD

Guilt is a powerful emotion. It has both motivating and destructive effects. It can be seen as a moral conscience, directing us toward doing the “right thing.” Imagine a society where there was no sense of moral guilt – this could lead to a situation where there is anarchy. Our guilt allows us to do nice things for other people, to care for those in need, to support family members, and overall be “good people.” When taken to an extreme however, guilt can be incapacitating. It can make us feel bad about ourselves and take actions that are ultimately not in our own best interest. It can cause us to hurt those that we love. In this article, I will explore ways in which parental guilt can have both a positive and constructive effect, as well as a negative effect on parents of children on the spectrum.

Parents are in unique roles. They serve as the caregivers of a child and ultimately make all major decisions for the child throughout their development, and often into young adulthood. There is a tremendous amount of responsibility that comes with the role of being a parent, and with that responsibility can also come feelings of shame and guilt. This is true particularly when there is a worry that the parents have made mistakes with regard to their child. There is often a worry that these mistakes can have a long-term negative effect on the functioning of the child.

I believe that parents of children on the Autism Spectrum are more at risk for feelings of overwhelming guilt than their neurotypical counterparts. Often parents of children on the spectrum have important decisions to make and the stakes can feel very high. Research supports that early intervention for this group of children is of utmost importance, so these decisions can have a tremendous impact on their child’s level of functioning in the future (Greenspan & Wieder, 2006). The pressure to make the “right decisions” at this time can increase levels of personal responsibility when any decisions are questioned. As a result, guilt and self-doubt can be extremely high for this group.

The following are four different scenarios that reflect common areas of guilt in this population:

 

Scenario #1: Guilt over self-blame: Hank is an adorable 10 year old boy with Asperger’s Syndrome (AS). Hank’s father, Aaron, has always felt that Hank was very similar to him. They look alike, talk alike, and even share the same interests. Since Hank’s diagnosis, Aaron has worried that he was somehow responsible for Hank’s deficits. He feels guilty for the genetic endowment from him, as well as wonders if he has demonstrated some deficits in his fathering skills. Every time he hears a comparison between Hank and himself, he becomes quite defensive and angry, but underneath he is frightened and guilty.

 

Scenario #2: Guilt over past mistakes: Jacob is a 21-year-old young adult male diagnosed with Asperger’s at the age of 18. Looking back over his childhood, he had many sensory difficulties, a lot of problems with motor coordination, and appeared to be quite anxious and perseverative. He also had a lot of compulsions and mood dysregulation. At the same time, he did have some friendships, although, looking back, they did not quite appear to be on par with his peers. Many of his difficulties appeared to be anxiety related and his parents took him to many specialists in anxiety disorders, but they never quite felt like anyone “got Jacob.” When a specialist finally brought up the diagnosis of AS, there was both a relief at the diagnosis, but a frustration in the lack of information and treatments that “could have been.” Jacob feels quite angry about being misunderstood for so long. His parents feel guilty that they “should have known better,” yet don’t like the blaming and accusatory tone Jacob takes with them. There are frequent disagreements about this area and it remains an area of tension in their relationship.

 

Scenario #3: Guilt over negative thoughts: Jane and Joe are a highly ambitious couple. They have both had highly successful careers in the areas of law and finance. They met later in life, and struggled to conceive initially due to Jane’s advanced maternal age. After Charlie was born, they were so happy and so relieved that their dream of having a child came to fruition. However, when it became clear that there were some serious delays in his development, they were initially very concerned and worried. They spared no expense or resources in obtaining an early diagnosis and enlisted the help of expert providers in diagnosing and treating Charlie’s Asperger’s. Ultimately, Charlie has done very well with his treatments, but Jane and Joe continue to feel a massive amount of guilt. For Jane, she feels some sadness and frustration that her son is not what she imagined. She is struggling to come to terms with the reality of some of Charlie’s limitations, but her biggest struggle is processing through her feelings of guilt over her own disappointments. “I know I have to mourn the loss of the child I imagined I would have, but I feel so terrible for ever having these kind of thoughts. What kind of mother looks at her child and feels disappointment?” In her effort to shield Charlie from her feelings, she has become quite permissive with him. Even though she knows he will thrive more if she is better with boundaries, every time she sets them, she backs down quickly when he challenges her, because of all her guilt.

 

Scenario #4: Guilt over child’s suffering: Samantha is a sixteen year old teenage girl with a diagnosis of ASD who has recently started acting out, challenging her parents, and spending more time in her room and on the computer. Her grades remain consistent, and she does continue to sustain her few, but close friendships. When her older brother (neurotypical) went through a similar process during his teenage years, his parents chalked it up to adolescent development and saw his behavior through that lens. With Samantha, they tend to worry that this is somehow secondary to her ASD and worry that they are missing something related to her symptoms and her past. They start second-guessing their choices and want her to attend therapy. Samantha is resistant, claiming she is doing just fine, but her parents feel bad and worry they are not helping her get better. In their zealousness to address her difficulties, and their worries that they may miss something, Samantha feels she is under a microscope. In an effort to protect her, they may be hindering her own independent adolescent experience, including learning to explore and think independently from her parents as she fosters her own unique identity.

 

These scenarios reflect just some of the areas that trigger guilt in the parents of children with ASD. Parents of these children often take full responsibility for their own critical thoughts as well as holding themselves accountable for actions that are often not under their control. They may feel a tremendous sense of self-criticism and self-blame for what transpired. This may be masked behind a veil of anger or defensiveness. There may also be a lot of anger and disillusionment with “the system,” those that should have known and pointed them in the right direction, and also a lot of sadness and personal responsibility for the mistakes that were made. Parents may invalidate their own knowledge for fear of making mistakes and dealing with guilt afterward. This can lead to a basic mistrust of one’s own parental instinct, or the opposite, making impulsive decisions, and then second-guessing oneself.

Parents in this situation may be so overwhelmed by their own guilt, they may not know how to move forward in trying to help their child’s progress and development moving forward. Unwittingly, they may make allowances for their child that may in fact not be in the child’s best interest, or may be blinded from accurately assessing the needs of their child, in an attempt to assuage the feeling of guilt.

After recognizing the presence and power of guilt, the next step is to try and work it through. We believe by understanding, exploring, and processing feelings, parents can begin to master them and feel empowered to use the guilt to set up the child for success. The guilt can be analyzed and understood in the context of the parents’ own struggles and conflicts, and therefore separated and contained from leaking into their interactions with their child. The feeling of guilt can be used as a powerful motivator to help the child achieve success. I use the metaphor of a river with a dam. By understanding the parents’ personal contributions, it can separate out the child’s individual needs from the parents own wishes, thoughts, and fears which can sometimes contaminate their parenting style. Awareness in this case breeds success.

In my own work with those on the spectrum, I find it helpful to see the work in the context of the entire family. This enables parents to have their own parent meetings with me where they spend time thinking about their own actions with their children, and whether they are acting in what they know (but self-doubt) to be their parental instinct, or if they are acting out of a personal sense of guilt. I find these sessions to be at least as important as the work with the child. We all have guilt. At times, it mobilizes our ability to demonstrate our feelings of caring and empathizing with those we love. At other times, it can feel like it inhibits us from doing what is best for those same people. Ultimately, it is within our power to find the right balance and model it to our children. And if we don’t, we apologize, try again, and model that it’s OK to make mistakes – yet another valuable lesson!

 

Shuli Sandler, PsyD, is a clinical psychologist. Among her areas of focus in her practice are children and adolescents with ASD and their families, as well as those who are experiencing a variety of difficulties in school, and young adults struggling with issues of achieving independence. Dr. Sandler has offices in midtown Manhattan with Spectrum Services and Teaneck, New Jersey. She can be reached at shulisandlerpsyd@gmail.com.

 

References

 

Greenspan, S.I. & Wieder, S. 2006. Engaging Autism. Philadelphia, PA: Da Capo Lifelong Books.

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